Nursing home vs. home care

[seadog42]

My father had a massive right cerebral artery stroke on July 4 this year, which caused complete left side paralysis, some vision loss in both eyes, incontinence and difficulty swallowing. Of course, he is still in the recovery and recuperation stage, receiving sub-acute skilled nursing care (SNC) at a facility.

 

At the present time, Dad is receiving feeding through a tube, is mostly incontinent, has complete left side paralysis and cannot balance, and has some vision loss in both eyes. He can speak with some difficulty, he is alert and aware of his surroundings. He cannot move from a bed to a wheelchair without the help of two aides.

 

I am keeping my fingers crossed that he is accepted for admission to a rehabilitation hospital, after they see and evaluate him on Friday. In the meantime, Dad is burning through the 100 days of SNC paid by Medicare and his health insurance. My mother has no siblings and cares for her elderly parents, who live independently. She also has some healthcare issues herself. I have no siblings and live with my family 360 miles away. Both my wife and I work professional jobs.

 

Under the circumstances, I know that my mom cannot handle being the primary caregiver for my dad at home, until Dad recovers more function. I've thought about and investigated full-time medical assistance at home, but I know that my mom would be fully involved 12-15 hours per day, which would plumb wear her out and not do my dad any good.

 

We are facing the fact that Dad needs full-time care and we are running out of time, unless he is admitted to a rehabilitation hospital (which may give us more time and potential recovery). Admission to a nursing home (living center, etc.) seems to be the only solution. I have visited and toured several in the area and settled on one close to my parent's home. As far as I can tell, it is VERY nice and they seem to take good care of their clients.

 

I see all the sacrifice here by people with relatives who had a stroke and by others that I know for their relatives. It makes me feel very guilty that I am considering a nursing home for Dad, but it seems the only solution where he would receive adequate care. I have asked the social worker to provide me with a list of Dad's needs and requirements if he were to come home. The social worker, their elderly law attorney (who has seen Dad), their financial advisor (who is close to them), and Mom do not recommend bringing Dad home, even with a live-in aid and visiting nurses.

 

I keep telling myself that I am thinking of his benefit, but I wonder if I am being selfish for not being a martyr like everyone else. Should I give up my job and family to move in with Mom to care for Dad at their house? Should I move Dad here and give up my job (or ask my wife to give up her's) to care for Dad in my home? What about my teenage kids, who deserve a life? What about my grandparents? Should they be uprooted out of their house to bring everyone here (where the cost of living is insane)?

 

Any ideas or comfort that I am doing the right thing would be helpful.

 

Andy.

[seadog42]

PS. Just to clarify, I have been to visit and help three times in the last two months, for a week or two each time. If Dad is admitted to the rehab hospital, I am preparing to go down there for awhile to support having my Mom see him and work with him at the hospital, which is 90 miles away from their home.

 

When I am home, I've experienced a lot of guilt whenever I do something pleasurable, no matter how simple it is. I go fishing once in awhile, which is a pleasure that I derived from Dad. It makes me sad, but it is therapeutic at the same time. I am slowly having less guilt about doing other things, which brings up a different type of guilt - the guilt of not feeling guilty.

[swilkinson]

Andy

We all have to make hard decisions and then live with them.

I had my aged parents (one with terminal cancer, one with dementia) live with me and brought my husband home from 41/2 months in hospital post stroke. I am not a martyr but knew that was the only decision I could live with.

You don't need to panic quite yet but you do need to make a list of possibilities and then work on the pros and cons of them. That way the decision is an informed one and not made out of the ether.

All the caregivers on this site are saints, or working their way towards becoming one. Mind you most of us feel far from sainthood as we each battle our demons day-by-day.

Providing occassional care and respite care is fine if the other parties can manage day-to-day care. Even if a solution resulting in his going home is not found you can still stay close by and provide some back-up for your Mum a week at a time.

I too felt the guilt you feel at every pleasure you experience, I used to feel that when we put my Mum into respite and went away on holidays by ourselves.

My Dad has passed on and my Mum has Alzheimers and no memory now and lives in a Dementia Lodge but I have no regrets for the sacrifices we made.

But it is an individual choice and no-one else has a right to question your decisions.

Hang in there, mate and we'll pray for you in the meantime.

Sue.

[pprovost]

Wow Andy!

There has got to be a solution to this dilemma. If you quit your job you no longer have insurance ( as a Canadian,this is my perception of how it works in the US). Should anyone fall sick in your own family, you would need to return to work but would you find work easily? You may check with the Red Cross to see if they provide assistance to people in such a situation i.e. transportation for visits to see your Dad.

I see no reason that a nursing home would be a cop out for you in lieu of financial and family sacrifice but you must follow your instincts on this one.

My prayers are with you on this one.

 

God bless

 

Pat

[jriva]

 

Hi Andy,

 

I looked back over your old posts to find out how old your dad is---72---because I do think age is a factor that enters into a decision when it comes to making the kind of personal sacrifices that you are debating in your head.

 

First off let me say that there is nothing you can do that will leave you guilt free. These are hard life choices and every one of them comes with emotional price tags. Guilt and second guessing just comes with the terrority, so you have to learn to deal with those feelings along with everything else. The fact that you are willing to take a leave from work to help out if your dad gets accepted into rehab should tell you that you're not just taking the easy way out to consider a nursing home, should he not be accepted. Having a loved one in a nursing home is not a cop-out. It still takes a lot of heartache, time and caring to over-see a family member in a home. Physically it might be easier but emotionally it's harder.

 

If your dad does get accepted into rehab and gains enough independence that his case worker thinks it's do-able to be in a home setting you could also consider an assisted living apartment for both your parents. Since you say your mom's health isn't good either, it might be time to downsize both of their lives. A friend did this with his parents and by the time his dad finally had to go to a nursing home a year later, his mom had networked a good support system at the apartments so she wasn't so alone.

 

Jean

[seadog42]

Thank you for the kind words, prayers, and advice. Your responses helped me deal with some of my recent feelings.

 

The good news is that Dad was accepted for admission to Moss Rehab Hospital yesterday! Their goal is to rehabilitate him to eat, remove the feeding tube, and at least get him to the point of moving to (with assistance) and sitting in a wheel chair. At last, I am finding a medical professional that seems to be on our side.

 

I guess that if you push buttons long and frequently enough, something good will happen. If Dad shows progress, it looks like home care is a good possibility. If not, then we will have to consider long-term care options. If he comes home, there will be of course a new set of challenges to manage, but I'll deal with that when it occurs.

 

Andy.

[seadog42]

I've been reading many of the postings on this board, when I have time, and find information and comfort about how people are dealing with these difficulties and difficult decisions. As you know, it helps to benefit from the experience of others who have gone through similar circumstances. Perhaps one day, I will be able to return the favor and offer my perspective to someone new dealing with a stroke of their family member and loved one.

 

In a way of an update, I have just returned from another 11 day trip to NJ. I was there as Dad was transferred to Moss Rehab in Philadelphia, helping Mom get to and from the hospital to visit Dad. Often, I find myself acting as the intermediatary for Mom and Dad, interacting with the Moss staff, who have been tremendously helpful. At the same time, I spent some effort attending to some other issues there, including working with Mom to clean house (which was being neglected), motivate her, and work with my grandparents who are finding it increasingly difficult to manage things at their house, particularly since Mom is trying to attend to Dad's needs. Mom is starting to come around, getting up earlier in the day around 8 or 9 am, attending to herself, and even making some pureed food to take up to Dad.

 

I came home (7 hour drive/fly/train) for a spell with my family, while Mom found a few friends (and my Dad's brother) to accompany her to Phila (she won't drive alone for that distance). We are struggling to find some help in that regard that will fill in the gaps, so I don't have to be in NJ only to fill that role (accompaning Mom on the drive). I have checked out her church group, a greater circle of friends, posted a flyer for car pooling at Moss, the county social services, and with the Moss social worker. Other than a once or twice trip by a friend, nothing reliable has been uncovered.

 

Checking other groups like Red Cross is a great idea, particularly since Mom worked as a volunteer there for 11 years. That reply to my message didn't register with me, until I re-read it tonight. Other groups that I will be in touch with include Knights of Columbus and Kiwanis, who may have a lead.

 

In the meantime, I am prepared to go back down to NJ when needed and my employer has been very accommodating. Fortunately, my 'savings' of a ton of sick leave is paying dividends right now. It is nonetheless stressful being away from my family and when I am helping Mom in NJ, I tend to loose weight even though I think I am eating well. This time, I lost 10 pounds instead of the 20 pounds I lost the last time I was there (I regained some weight in between trips to NJ).

 

The good news is that Dad is making slow progress in rehab. Although not yet weaned of the PEG tube and eating a complete meal, he is nonetheless eating 25-50% of a meal three times a day. He is getting OT, PT, and ST for as much as he can tolerate before becoming exhausted.

 

On the gloomier side, he is having difficulty keeping his head centered and upright, developing a rather bad stiffness in his neck and shoulder. The PT seems to be helping that some (and I have worked with him on some of that myself), but the hospital is evaluating and leaning toward some type of direct injection to loosen up the muscles so that they can work on this more effectively. I'll know more details about the injection when they consult with us before giving Dad this injection.

 

Dad has also developed a tremor on his right (unaffected) side arm and hand. The strange thing is that it starts when his arm is aside him at rest and seems to be getting progressively worse. When he uses his hand or arm to do something, the tremor stops. The hospital thinks it may be an onset of Parkinsons or a side effect of the Raglan, being given to stave off acid reflux from the tube feeding. If its Parkinsons, I am surprised that it is developing so quickly with no known symptom before the last two weeks. If it is the Raglan drug, that can be stopped when and if Dad begins eating more. Any knowledgeable thoughts on this?

 

We and the hospital staff don't know yet how far Dad will recover from rehabilitation and whether it will be enough for him to be adequately cared for at home. We are in limbo on this, not knowing whether to begin making changes at home (ramps and bathroom modifications) or not.

 

I am keeping my fingers crossed and hoping things will work out. In the mean time, Mom's emotional state seems much better than it was. She was devastated that Dad had 'plateaued' on Level II rehab, but is holding hope for Dad's recovery now that he is at Moss Rehab.

 

Hopefully, they will be able to work with him long enough to see some significant recovery to allow him to come back to his home, which is what he desperately wants. He still has over 100 days of medicare hospitalization coverage (using a 60-day one time extension), but he has to show continuing progress. I've seen progress, but I hope that progress is enough to qualify.

 

Andy.

[swilkinson]

Thanks for the update Andy and so much positive news. It must be tough being a long distance carer and commuting between parents, grandparents and home. Good on you for doing it.

The rehab news sounds promising, while there is progress life seems much brighter. Good news too that your Mum is coping better.

Keep us updated, we will keep praying for you.

Sue.

[doing my best]

I am a new member but happened to click on your message. Please see an eldercare attorney. I have discovered there are options for people as yourself. It can be arranged for in home care to replace nursing home care paid by Medicaid if you go through an attorney. Don't listen to the social workers at the homes...they are totally unaware of the laws.

[seadog42]

Thanks for the advice, Doingmybest. My parent's normal attorney happens to specialize in Elderly Law, and appears to be well-known in the elderly medicare circles. I have however hired an elderly care manager, who we will be meeting on Monday to see whether it is realistic to care for Dad at home.

 

I am still a bit skeptical whether caring for Dad at my parent's house is best for him, but that is what he and Mom wants. I'm willing to go along with that, if it can happen and doesn't harm Dad, wear my mother out, or eventually make them destitute with no options.

 

Between having Medicare pay for "medically necessary" expenses and possible other benefits through the VA, plus live-in round the clock assistance, maybe I can make things will work out for him.

 

Does anyone have any experience with any VA benefits for in-home care? My Dad was honorably discharged in the 1950s, but never applied for VA medical benefits for fear that they will require him to go to the VA facility for medical treatments. My parents have heard horror stories about the VA facility from friends and associates, but they were very helpful for my FIL in his last year.

[fking]

Andy, I use the VA, It may depend on your dad being service connected disable or not. I got rehab twice weekly, going to them. I don't know if they have in-home care. I got a hospital bed, wheelchair, stationary bike and a scooter.

 

The horror stories depend on the facility, I had my colonocopy there and was pleased with the facility and service. One factor is the doctors often rotate so regular, they get an attitude perhaps that what ever happen so be it. I'm assigned to a clinic, over the past year, I've had 4 different primary doctors.

 

All of the stroke patients there I've seen are old soldiers(Vietnam and back), but the facility is state of the art, its the the personnel that turns gives a VA a bad image.

 

I hope you can get something worked out on Monday where you can feel better and go on with your life as well. Good Luck Andy.

[seadog42]

Thanks for the encouraging information, Scooterman. I tried calling the VA in Trenton a couple of months ago and couldn't drag much information out of them. I will try again, particularly if Dad is coming home and could use their assistance for some things. He will for starters need a wheelchair, but as I understand it the hospital deems it as "medically necessary" so Medicare will pay.

 

The geriatric care manager thought that more PT would be very helpful and recommended another facility for Level II therapy, before Dad comes home. We visited there last week and it looked very good, a small facility that focuses on skilled Level II rehab. So we are going to give it a whirl for the remaining 30 days Dad has under his Medicare, and possibly longer if it continues to be productive.

 

Mom and I worked with the PT staff on Monday to transfer Dad from a wheelchair to the front seat of the car. You really need two people to do it, but it seemed to work out pretty well. I was able to pick up Dad from the wheelchair to a standing position, pivot on his good leg (which he seemed to be standing on himself, with only a bit of help from me for balancing), and set him into the front seat of the car. This was something that I would not thought would have been possible, when Dad was admitted to the rehab hospital four weeks ago.

 

First thing they plan to do is put Dad on a toileting schedule, which will be a big help if it works out so he is not relying on a diaper. A little more work on strengthening his torso and good side, continuing to eat and take medications by mouth, and being able to "go" on a commode and I can see things working out at home (with considerable support).

 

Keep your fingers crossed. I am. If that happens, maybe the financial issues and stuff will sort themselves out with some more effort.

[door60]

Seadog:

Glad to hear your Dad got approved for the next level of therapy. Try to convince the hospital that he is better off with an electric wheelchair. Medicare will pay for this too, if he can not maneuver the regular one by himself.

Just to let you know, my mother learned to stand by herself after 3 months of therapy, so the transfers, I'm sure, will get a bit easier.

Dorrie

[seadog42]

I'm back from NJ. As an update, Dad is still in sub-acute rehab. At first he seemed to be making little if any progress, but I heard today that he successfully moved himself from the wheelchair to a flat bed and back, with the help of a transfer board. In my opinion, this is a big step forward and could help things be a little more manageable when he comes home.

 

It has been a struggle with people, but the wheelchair situation appears to be sorting itself out. He know has a 'tilt in space' chair that helps him use gravity to maintain a little head posture and he now does not have shoulder pain or nighttime muscle spasms.

 

Dad is nearly through his 100 days of SNC. Since PT seems to be helping, it looks like we will have to pony up about $8k to allow for another month or so of work where he is at - then plan on bringing him home in January. I think we will need 24 hr assistance at least for a few months, a nurse coming in to monitor dad's medical condition, and someone coming in for therapy.

 

Anyway, thanks for the advice and support. Being in touch with others who have been through this stuff is a big help.

 

seadog

[Guest joy]

Hi, Seadog, No, no, no. You are not expected to give up your life or your family's life to take care of your Dad. From the point of view of one who has needed care for a while, I chose to go to a nursing facility and made the arrangements myself prior to my surgery. My husband was still in the nursing home after his stroke and I chose to be there with him instead of at one of my children's homes. They were appalled and did not understand until I explained it fully to them. They are good kids and had taken care of their Dad (we have been divorced for many years) when he had heart surgery. They did not understand at first why I would not let them take care of me too. Once it was clear that it was my choice to be in the nh, they were okay with it (and I think a little relieved).

 

In Texas, once you are in the nursing home, you can apply for Medicaid to help with the costs of the nh. If you qualify, then you can apply for In-home care (if you are able to go home with some additional help). My husband was in the nh for four months while I got everything ready and then we both came home from the nh with help three days a week. This gives me time to go to the doctor, grocery store, etc. They also have paid for some home modifications and some equipment for him. This has been a God-send. Check with the nearest State Office for Aging in your area and see what they have to offer. Maybe something like that would work for your Dad. We just love our Aide and I trust her completely with the care of my husband while she is here. She is our personal Angel.

 

Hope this helps some.

 

Joy

[donkeedix]

hi..my name is Melissa i am new here i was reading your post about putting yor father in a nursing home and this only comes from experince if you can affored it hire aids to come to your house to watch him.....i know all of his problems would be 2 hard on you by yourself but i have worked in nursing homes since i was 22 am now 26 and believe me they all put up a front watch the aides they are usually pretty unsypethic to there needs (not all of them but most) so if you do decide to put him in a nursing home make sure you are watching how is dressed acts and the aides that care for him and actually if you wanted u could put him in a nursing home but hire your own aide where you will feell more comftabrle...just my 2 cents

[calendulady]

I read all the posts and I have a few things to add. After working in the ventilator unit of a skilled nursing care facility (specialized nursing home for patients on life support), I worry when blanket statements are made about different facilities without regard for the many caring and capable people that may interact with your loved one on a daily basis.

 

Your parents are very fortunate to have you as a son. Many people survive strokes everyday, only to be faced with the difficult task of making all the arrangements without the help of a concerned family member or friend. Whatever decisions you make, it seems that you have your parents' best interest in mind.

 

As someone else posted, if/when your Dad comes home to live, keep in mind that fatigue is a huge issue when it comes to stroke recovery. It takes rest to heal. And I, for another, have also made some poor choices since coming home from rehab, trying to do things that were not safe, but I was SURE that I could handle it myself.

 

Just my opinions -

Deb

[Guest Susie]

 

Just another perspective to add - my mother had a stroke 12 months ago. It has been a year of ups and downs, hopes being raised only to be dashed and setbacks followed by unexpected improvements. She is completely paralysed down her left hand side, incontinent and tube fed. She has had several stints in hospital during the year with infections that left her miserable. And yes, she lives in a nursing home. As she says, her greatest wish is for her children and grandchildren to be able to live a normal family life and her greatest fear is that she would become a burden.

Today she came to my home for Christmas. As she told the nurse as she returned HOME she had a wonderful day. She makes the most of every day, she doesn't complain and she has good friends there she never would have met. SHE IS HAPPY despite everything, and thinks that life is worth living. So what I am saying is if everything doesn't always work out as you would want don't necessarily think that all is lost. Life can still be worth living - it is all a matter of attitude and acceptance.

 

Susie

[seadog42]

Hello, everyone. I am adding to this thread, so that someone might benefit from my experience with my dad's stroke and to update the status for those that were interested and replied to my earlier pleas for advice.

 

It has been a very difficult seven months so far since my dad's RCA massive stroke. I think the last I posted was when he was admitted to Moss Rehab Hospital in Phila for Level I rehab. The staff there was very, very good and tried very hard to improve Dad's condition thru rehab, with the eventual goal of being able to bring Dad home to care for him.

 

The therapy at Moss was about as successful as I thought it could be. Unfortunately, there is only so much therapy that the system allows at that level and only so much of that intense therapy that Dad could tolerate. Nonetheless, they were able to improve his eating skills so he could manage with mechanically altered foods (cut up very small, a step up from pureed food). They also strengthened his good (right) side and began working on his ability for assisted transfers. Unlike when he was admitted, Dad was able to support his weight on his good leg and help in the transfers with his good arm. This is a big improvement over using a Hoyer lift to transfer him. The hospital also worked with us to fit Dad with a Tilt N Space wheelchair that better supported his body and head (Dad has difficulty keeping his head erect). Unfortunately, Mom demanded a different chair when we were able to get a more permanent chair for him while he was later in Level II rehab.

 

After the Level I therapy, we transferred Dad to a Level II rehab facility. I was down in Phila to help Mom take him from the hospital to the secondary rehab facility. On one hand, it was a bit frightening to take dad on our own, and on the other hand it was a proud moment, both for us and Dad. He enjoyed being out in the car for the first time in almost five months.

 

Dad was in the Level II rehab for another 9 weeks. There they build on the progress Dad had made at Moss. They were able to work with him to use a transfer board to move from one surface to another, with assistance. I cannot say that they made as much progress with Dad, but there was some measurable progress. The plan was to develop Dad's abilities through therapy to be able to bring him home.

 

During the time from the end of his treatment at Moss, we hired a 'geriatric care manager' to help us put the pieces together. She helped us arrange better Level II therapy than I knew about and also helped us put the pieces together for the transfer of Dad to home, including finding a good live-in home health aide. I would highly recommend hiring a geriatric care manager, particularly if you do not live near your parents and don't know the available services in the area.

 

While at the Level II therapy, we managed to bring Dad home for Christmas Day. It was quite a daunting task, particularly since we had no special help, but it worked out and Mom and Dad had a real nice (although exhausting) day. Somehow, my wife and I got everyone together for the day, including my grandparents who live independently in the area, but do not drive. The plan was to bring Dad down early (an hour and a half drive each way), have an early afternoon Christmas meal, and take Dad back home when he was tired and ready. Most of the time, Dad sat in his recliner and just took things in and slept when he needed a nap. He got to play with his dog a little, who was very glad (almost ecstatic) to see Dad.

 

I almost lost it when at 8 pm, Mom offered Dad to lie down in the back room for a nap. I thought at that point it was time to take Dad back to his bed at the rehab facility. I had been up since 5:30 am and was afraid that we wouldn't be able to reawaken Dad to take him back, and we were unprepared to manage his care overnight. I even had a plumbing emergency in the kitchen to repair during the day.

 

I have to mention that Mom tried to do everything possible to do things exactly like they had been done in the past. I don't think she realizes how demanding she was on my family and me. It was a harbinger of things to come.

 

Oh, yes, this was also a test trial of the handicap ramp I had built during my many trips I had taken down to NJ (a seven hour drive each way). The ramp worked pretty well, even though the permanent wheelchair that Mom demanded in Level II rehab was much bigger than the one in Moss and consequently more difficult to maneuver. The ramp right at the front door didn't work out so well, which I replaced with a better one that I built here at home before taking it down to their house in January.

 

On Jan 17th, Mom and I transferred Dad from the Level II therapy facility to his home. At the same time, it was a monumental, but frightful day. The home health aide was by this time hired and she went with us to transfer Dad. Because I cannot be there all the time, I basically let Mom and the health aide work on transferring Dad into the car and to his home. I took a separate pickup truck to transfer the wheelchair.

 

Dad has been home now for almost two weeks. I stayed in NJ for a little over a week to make certain that things were working out and that Mom and Dad were safe. I also took the time to install one of those gas-fired fireplace-like space heaters to address an issue that the geriatric care manager had, who thought that an area of the house was 'drafty'. Lol, she should come to my place where I keep the heat about 10 degrees colder than my parents do.

 

Overall, I believe that most things are working out about as best as can be expected. Dad is continuing to get (PT,OT, ST) therapy in the home and a bit of skilled nursing care through an agency. Eventually these will also be limited, but Dad is seeing a new doctor who will see Dad at Dad's home and seems supportive of continuing therapy. My biggest problem and the one that might be the undoing that prevents Dad from being at home is Mom.

 

All along the way and particularly at home, Mom is trying to do everything and demand that everything be done a certain way, no matter how difficult it is. Everyone keeps telling her to not try to do everything and that some things have to be done differently than they had been done in the past. Mom is very stressed out and tired, despite having the health aide living in the house 24 hours a day. I can only help so much from afar (I also have a family and a career to attend to). Through this, my career took a bit of a hit as I was permanently reassigned and given less important duties.

 

Mom is responsible for only two things: giving Dad his medication (4x/day) and maintaining his PEG tube (which may eventually be removed if Dad continues to improve or at least maintain his condition). Nonetheless she is not letting the health aide take full responsibility for stuff, including preparing meals. Mom's nerves get to her and makes her colitis act up. She feels that she cannot get out of the house, even for a little bit to go down to the store.

 

Legally, the health aide cannot administer medication, but a friend or relative can do so. I've tried to tell Mom this, but she thinks only an RN or LPN can give Dad his medication.

 

Dad is requiring more transfer by lifting (assisted one leg support) than by the transfer board. It turned out that the health aide has had back problems and is finding this difficult. That coupled with Mom not letting the health aide take responsibilities from her has led to a little friction between the two. I have requested a change in the health aide, a change that Mom has found difficult to accept. The change is scheduled for next week and I hope that a better dynamic evolves. The real issue isn't the health aide, however, it is Mom's attitude and approach.

 

Over the last week, Mom has been talking about wishing that she had kept Dad where he was at in the rehab facility (also a nursing home). She says that she didn't realize how difficult it would be and that she would be responsible for Dad's medications. She has spoken about deciding on plan B (placing Dad in a nursing home) back where he was, an hour and a half away from her. She wanted me to come down to speak to Dad about it, but I told her that that was between the two of them. I'd support their decision that they believe is in their best interest, but I don't want to be the one to force Dad in a nursing home when he wants to be home.

 

Any suggestions about how to help Mom manage her stress over caregiving? I haven't found much in the way of support groups in the area and wouldn't be very successful in getting Mom to go. Being so far away (5.5 hours by air, 7 hours drive), makes it very difficult to go down there just to give mom a spell. And frankly, there is only so much being away from home that I can tolerate either. Some have suggested that Mom and Dad move up here, but there are two compounding factors. First, Mom would loose the house and related finances in Dad's care if they move. Second and most importantly, my Mom's parents also live down there independently. Moving all of them would be impossible.

 

I'm not stopping the support that I have given, but I feel that I cannot provide more help than I already am doing. I know that I have done the utmost to see the situation work out and feel that I need to give it time to work (or not). Even if I were able to help more, I fear that Mom would continue demanding that things be done in the most impossible and burdensome way. I have no siblings and my Dad's brother and sister are a bit reserved, particularly with my Mom. Sometimes, I feel like she prevents people from helping her or won't ask for help from those nearby.

 

Andy

aka seadog42

 

 

Oh, BTW, Dad's outlook has been very good through all of this. He still believes that he will get well enough to walk. Who knows? The PT that came to their home was very good and found that Dad had a little control of the muscles around his knee. I am a little skeptical of this, but this PT was the first to really work on Dad's affected side. If only the length of available therapy could be much longer.

[door60]

The only thing I can think of to do is when your mother gets the new aide, give specific instructions to the caregiver that she needs to do all the cooking, and to instruct the new caregiver that she needs to tell your mother to go to the store, or to get her nails done or whatever.

It's a real tough situation, and I really hope that it works itself out to a solution everyone is happy with!

Dorrie

[jriva]

 

 

Andy,

 

Would it help any in the effort to get your mom to accept the full help of the caregiver if you printed out the Caregivers Bill of Rights in our Classic Postings & Advice forum and sent it to her? The first four points it makes might speak to her in a way a son and daughter-in-law can't. A lot of caregiver guilt and stress comes from feeling like you have to do it all, be there 24/7 or be judged as not being a very good spouse. This is especially true of older women.

 

Her reluctance to do the medications and his PEG tube also makes me wonder if she has serious doubts about her ability to keep them all straight. I know that the nurses in the hospital who train spouses to do this stuff don't always do a very good job of it. Is there any way you could arrange to get her a one or two hour training session again from a visiting nurse? I know they are available in my state if you can get a doctor's order.

 

Jean

[lara1632]

hi andy

dont feel guilty, my brother who is just 49 had a massive stroke this past july also. he was not paralized but he had some brain damage. he was on so many tranquilizers until this past december that he could nt respond to any thing. i argued with the doctors about taking him off them but finally did after sending him to the hospital and the er doc said to take him off them. it has been two months and he is so muvch more himself.

but i am all alone here in kentucky and he had lost his job and home. so since i could take him home with me because im by myself, he had to go toa nursing home. its ok but since he had no insurance or money, the only ;place that would take him was a low income or poor nursing home. its not the nicest place but they treat fairly good, he has made some friends. the hardest part is that h e is so young (49) to be in with the all old peo;ple.

but since he had so many problems that lead to the stroke, high blood pressure, diabetic, high cholesterol and im ashamed to say alcohol. but now he is very stable with his meds and all his vital signs are great. he get around by himself, feeds himself , he just needs retraining with daily things.

so,....im debating and fighting with my consience and may very well bring him home with me.

i know how you must feel, i felt so guilty at first, and he was angry with me at first. but there at least i know if any thing els happens like another stroke the can handle it. i still feel like i abandoned him, but he knows its best for him.

since he is so alert and active and there isnothing to do he gets bored

so believe me, i know how you feel./ just pray and let god help you he will\ lara

[calendulady]

Andy - :hiya:

 

Thank you for the updates on your Dad's

progress. My husband (caregiver) would tell you

that our journey is still plagued with up's and down's.

And the constant struggle for money to pay for treatment

and medications is huge, given the fact that I have no

insurance.

 

But the most important thing is that I survived and

I am slowly becoming more aware of the enormous

weight carried by caregivers.

 

Perhaps your Mom would loosen the reins a bit

if she were told by you what she has to do to help you

coordinate better care for your Dad. And that her job is to

take care of meds, peg tube, and serve as a model for your Dad's

emotional needs -- in order to do so, she has to

take care of herself first.

 

Do you have any idea if she has any close friends

that might be able to coax her out of

the house from time to time in order to let the health aide

get her own work done?

 

I'm just throwing this stuff out there ...

The answers and means will come to you

in due time.

 

Sending my best to you and your family.

 

Debbie :Typing: