• entries
    25
  • comments
    129
  • views
    7,335

Limited Resources


Strokewife

1,081 views

The second anniversary of my husband’s first stroke and the day I became a caregiver recently transpired.  Upon this anniversary day my stroke survivor began aquatic therapy.  This is something he wanted to do for sometime but being wrapped up in a medical system that dictates the where, when, and why we had to wait.  Thus, good things do come to those that wait.  

My husband’s ability to do things on his own is still very limited.  I, at this two-year mark, still assist my husband with most tasks such as dressing, transferring, hygiene and food preparation. Certainly, he puts forth an effort to try and do things himself, but most times will need assistance or accept I will do it for him.  Often, I have to encourage him to try something himself.  Frankly, his mind can not always rationalize doing these things on his own.

 

So, as I assisted my husband into a lift chair that would lower him into the water I held apprehension.  The therapist standing over six feet tall took my husband out of the chair and starting him walking backwards.  Back he went, then forward and then side stepping.  They had him kick his knees, move his arms, step up and down on steps, and hold himself in place. Over and over they assisted him to perform…Perhaps cognitively this moved a bit too fast for my husband yet he did it.  Don’t get me wrong the therapist was holding onto him the whole time but my husband was moving his left arm and leg on his own as if it was not a problem. I am pretty sure my mouth was gapping open in amazement.

 

As we exited the pool and moved to the handicap restroom we entered into what I will just say was a “God send.” This designated family washroom had a shower with a bench and bars for the handicap.  The same was in the toilet stall along with an additional dressing bench equipped to assist the disabled. I was able to help my husband with showering in an environment that was clean, private and spacious. I suppose it may sound silly, but our “make-shift” bathing arrangements we have at home has made bath time a tedious task for me.  Yet, on this day a beautiful gift was presented to us.

 

With all this “gifts from heaven” that I felt was laid before us it reminded me of the limited resources that stroke survivors are given. Specifically in my husband’s case he is young…not yet a senior…so the resources we have for adult day care are few and far between.  I am not saying they do not exist but in the area we live it just isn’t plentiful.  It makes me ask “Why?”  We have several hospitals that are STROKE trauma centers in our area. Which would imply knowledge of brain injury therapy and means for unlimited resources.  Yet, as my husband and I went through a system of therapy for a stroke “victim” I became aware of just how limited resources are for those who become young stroke survivors.  

 

Our journey was very rough and I know there were things that could have been much easier than they were.  That is all water under the bridge…More so, I can say, my dear readers, I have been made aware. I want to pursue the idea of a spa setting that caters to the handicap where one can go and soak in a bath with out fear of drowning or even just getting in and out of a tub.  Perhaps, finding a place for individual who need daily assistance but want to socialize and feel normal.  I feel compelled to research this idea.  My husband is a stroke survivor…I am his caregiver, but this journey has led me too more than taking care of him.  Therefore, I simply pose the discussion to my readers regarding limited resources for stroke survivors and what you have experienced or done in your area.
 

4 Comments


Recommended Comments

Ray had his major strokes at 57 so we too fell between the young stroke survivors ( 20-40) and the senior (65 and over) stroke survivors and therefore I had to fight for care for him and really only had help the last five years of our journey when he was over 65 and "qualified".  That difficulty in accessing care happens in Australia so you don't get the help you need unless you find it for yourself.  I found talking to other caregivers really helped me to find out what was free, what was not too expensive and what the govt or some civic minded organisation helped with.

 

I'm glad to hear the water therapy was a success, hope you find he improves as he gets more confidence in the water and with his therapist, that seems to take some time.  I hope you take advantage of the water and have time for a workout too. I found time to do some exercises while Ray was walking up and down the pool.That was one period of time we both benefited from.

Link to comment

Oh yes wjy do those of us in that mid range get so little support?  I was 45 when I had my stroke and I learned very fast that I had to fight to get "the system" to acknowledge that I needed to access the help provided for senior citizens.  And yes those family change rooms are marvelous things, I wish they were more common.

 

Water therapy makes a huge difference it makes so many movements that you can't do on land accessible, It's mostly because the water provides support against gravity. as I learned quickly and still say constantly "gravity sucks".

 

Your idea of a spa sounds brilliant. The thing that I want is the ability to hire a care with the hand controls I need.  I've heard that this is available in the US. It certainly isn't here in Australia and it means if I go on a holiday I have to drive there (i.e. bring my car with me) or fly and then rely on buses and taxis. which is never easy in a strange town.  It's not like the hand controls are expensive com[pared to the cost of the car and they don't stop the car being usable for other drivers.

Link to comment
On 6/16/2017 at 8:52 AM, HostSue said:

Ray had his major strokes at 57 so we too fell between the young stroke survivors ( 20-40) and the senior (65 and over) stroke survivors and therefore I had to fight for care for him and really only had help the last five years of our journey when he was over 65 and "qualified".  That difficulty in accessing care happens in Australia so you don't get the help you need unless you find it for yourself.  I found talking to other caregivers really helped me to find out what was free, what was not too expensive and what the govt or some civic minded organisation helped with.

 

I'm glad to hear the water therapy was a success, hope you find he improves as he gets more confidence in the water and with his therapist, that seems to take some time.  I hope you take advantage of the water and have time for a workout too. I found time to do some exercises while Ray was walking up and down the pool.That was one period of time we both benefited from.

Thank you Sue for sharing.  You always have such great words of wisdom.  I haven't quite got to the point of swimming myself but I am taking the time to just rest, read, and relax.  I find it nuts that we have to fight for care.  My husband would not have what he has gotten thus far had I not walked the extra mile.  I often wonder how many are out there just sitting in a corner at home because they do not have an advocate.  Thus, why I bring up the topic all together.  An interesting side note:  There was just a news article talking about a water park for the disabled.  It is in my home state of Texas...it is more for children, but signals went off in my head when I heard this that I need to contact that facility.  So, stay tuned...I may have more to report.

Link to comment
On 6/22/2017 at 0:05 AM, heathber said:

Oh yes wjy do those of us in that mid range get so little support?  I was 45 when I had my stroke and I learned very fast that I had to fight to get "the system" to acknowledge that I needed to access the help provided for senior citizens.  And yes those family change rooms are marvelous things, I wish they were more common.

 

Water therapy makes a huge difference it makes so many movements that you can't do on land accessible, It's mostly because the water provides support against gravity. as I learned quickly and still say constantly "gravity sucks".

 

Your idea of a spa sounds brilliant. The thing that I want is the ability to hire a care with the hand controls I need.  I've heard that this is available in the US. It certainly isn't here in Australia and it means if I go on a holiday I have to drive there (i.e. bring my car with me) or fly and then rely on buses and taxis. which is never easy in a strange town.  It's not like the hand controls are expensive com[pared to the cost of the car and they don't stop the car being usable for other drivers.

I have said many times...I would just like a driver...someone to take us and do all the maneuvering in and out of the car.  I am sure I could have such a person but not without a cost.  Most of the things I desire for my husband are things that would make it easier for me.  The spa idea came about because I have always like to do that kind of thing and would like to take my husband but know I wouldn't be able to do so without help. So, I thought why don't we have these things.  In every therapy group my husband has been apart of they have set up for bathroom, kitchen, and bedroom...you know to practice...so why not allot time in therapy that would be bath day completely staffed with those who can assist.  It just seems like an easy thing to install but those who pay for the therapy (ie: insurance, medicare) don't incorporate this.  When we spoke to the doctor about it he signed for home therapy to come to our house.  Somehow, they deemed my husband as doing so well on his own that he didn't need that therapy.  All the while I was saying it was for me...to help me.  Ho Hum!  Anyway, thanks for taking time to share.

Link to comment
Guest
Add a comment...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.