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Info Seeker
Posts: 1
Registered: ‎06-29-2013

Re: YES: Is anyone taking care of a spouse?

Message 11 of 278 (858 Views)

My husband is 82; I'm 65.  He's had 3 thankfully minor strokes, a double bypass surgery in 2013, followed by gallbladder removal, and is now in congestive heart failure.  At 6 feet, he's down to161 pounds, and can't walk for long without a cane because all the meds he's on have interfered with his sense of balance.  Plus, he's very weak, and sleeps a lot.  He's also diabetic, has gout, and lived a life that wasn't kind to his body physically.  He was a hard rock miner, a brickmason, a carpenter, and an extreme skier.  In the Air Force, he was in aircraft crash rescue.  So he has problems from his past that he's still living with. 

The hardest thing for both of us now is knowing that his heart condition means his heart could fail at any time.  My stress comes from the fear of leaving him alone and coming back to find him gone.  His fear is leaving me in a less than optimum financial situation. 

We go to the library at least once a week, and shop in the local grocery store, as well as the Fred Meyer's 15 miles away.  He uses a motorized cart at Costco, and at the clinic I push him in a wheelchair.  On the surface, he accepts all that as inevitable, but I wonder sometimes if he isn't resentful and impatient at not being his former healthy self. 

I can't bring up what I'm feeling because when I do he counters with "Well, what about me?  I'm the one who can't do what I want to."  He doesn't get that I can't do what I want to, either.  I'm now the one responsible for everything around the house with the exception of some cooking and some credit card bills that he pays online. 

I'm overwhelmed, and feel guilty that I resent the constant worry and tending.  I tell myself it's natural, and I have a lovely friend I can call and vent to.  I just wish I could help my husband see how much stress I'm under.  I can only guess at his; I'm not the one with a terminal condition.

We have excellent medical care.  There are two teams that are available to us:  one to keep his Warfarin in balance, the other to help with the congestive heart failure, which they say is treatable but not curable. 

Sorry to take up so much space.  I hope I can help anyone else caregiving for a spouse deal with the weird intricacies involved.

 

Recognized Social Butterfly
Posts: 795
Registered: ‎03-06-2010

YES: Is anyone taking care of a spouse?

Message 12 of 278 (952 Views)

Mary,

Your post is from 2013 but touches many of us to this day.

It is a lonely struggle that never seems to change or end.

No help or support.  Hopeless sums it up. 

The question is should I give up?

BELIEVE.gif

 


Futurehope wrote:


Hi



I am new to this sight. I have been caregiver to my husband for the last three years and recently had to quit my job and become a full-time caregiver because he can't be alone anymore. He has dementia and Parkinson's and gets lost in our home.It has been a big adjustment because my husband gets so confused with everything and I have to take care of absolutely everything. I feel alone most of the time even though he is here. Unless you are in this situation no-one else understands. Talking with other caregivers is important because we understand the hi's and lo's of our days.



Good Luck and God Bless each of you!



Mary


 

 

Frequent Social Butterfly
Posts: 261
Registered: ‎05-04-2011

Re: Is anyone taking care of a spouse?

Message 13 of 278 (1,182 Views)

Reggiemac wrote:

I am newly slated to care for my husband of 7 years after he recently suffered back to back strokes.  The twist is, we were going to be separated prior to the strokes, amicably.  He had already applied for and received Section 8 housing since his SS income is all that he had and a small pension for housing.  After the strokes, we had already given up our apartment and his wasn't ready yet, so we moved in with our daughter for about 5 months.  He then was able to move into his apartment, but I couldn't as I was not on the lease and it was quite small to boot.  I live with my sister and travel back and forth to his apartment to check on him.  He needs ongoing checkups as the strokes have left him with short term memory loss and weakness on the left side of his body. He can function ably, but his day to day care is being neglected and he does not eat to provide nutrition and he has lost an alarming amount of weight.  He used to be quite fastidious about his appearance, but now his beard is scraggly (not shaving) and he sleeps and travels in the same sweats and shirts.  I understand that I have to move back in with him as companionship and family is important to him and he is vehemently opposed to "strangers" caring for him at all.  Because of the Federal guidelines, I cannot stay in the apartment with him and if I do, only for a limited time.  Is there a way that I can get housing for both of us even though he receives Section 8 assistance?  I am employed and I believe that I add to any rent that is imposed but I do not want to compromise his standing in the program and not sure how to look for a property or home that will accept both his payments from Section 8 and rent from me.  I am not even sure if I am framing this query correctly, but I just want to know if anyone has any ideas out there.  We live in Maryland outside of Baltimore.


Hi ReggieMac, you are in a pickle. If you go to www.Eldercare.gov and type in your zip code, you'll find the agency that is supposed to help everyone who is disabled and / or over 60 to get the help you need, including very specific legal and financial issues that you bring up here. Let me just throw out some questions and please write back to say what makes sense and what else you need:

1. if he is getting less care than he needs now, (any care at all?), why is it so important for him to stay in this apartment? Section 8 places take years to get into but it sounds like he needs a state supported assisted living place. I'm curious how he qualified with you still working since spouse assets get included, but what matters now is getting him adequate care wherever.

2. and since you were going to separate (and eventually divorce?) what is the future plan for him? before he had strokes he was independent and he was going to live in the apartment and come what may. but now? yeah he had strokes but...what if you'd separated 6 months ago and then he had the strokes? would you move back in? was that always the agreement? Separate until one of you needs caregiving and then the other steps back in?

women do so much caregiving. if you were in section 8 and had 2 strokes, would he step in? just asking.

3. You share a daughter. who else is around? how about a family meeting? think this through. with a group.

 

does any of this make sense? do i have this completely wrong?

btw, an eldercare attorney would be super helpful. i know, not cheap. but both your financial futures hang in the balance. 

 

write back?

jane

Info Seeker
Posts: 1
Registered: ‎12-08-2011

Re: Is anyone taking care of a spouse?

Message 14 of 278 (1,043 Views)

I am newly slated to care for my husband of 7 years after he recently suffered back to back strokes.  The twist is, we were going to be separated prior to the strokes, amicably.  He had already applied for and received Section 8 housing since his SS income is all that he had and a small pension for housing.  After the strokes, we had already given up our apartment and his wasn't ready yet, so we moved in with our daughter for about 5 months.  He then was able to move into his apartment, but I couldn't as I was not on the lease and it was quite small to boot.  I live with my sister and travel back and forth to his apartment to check on him.  He needs ongoing checkups as the strokes have left him with short term memory loss and weakness on the left side of his body. He can function ably, but his day to day care is being neglected and he does not eat to provide nutrition and he has lost an alarming amount of weight.  He used to be quite fastidious about his appearance, but now his beard is scraggly (not shaving) and he sleeps and travels in the same sweats and shirts.  I understand that I have to move back in with him as companionship and family is important to him and he is vehemently opposed to "strangers" caring for him at all.  Because of the Federal guidelines, I cannot stay in the apartment with him and if I do, only for a limited time.  Is there a way that I can get housing for both of us even though he receives Section 8 assistance?  I am employed and I believe that I add to any rent that is imposed but I do not want to compromise his standing in the program and not sure how to look for a property or home that will accept both his payments from Section 8 and rent from me.  I am not even sure if I am framing this query correctly, but I just want to know if anyone has any ideas out there.  We live in Maryland outside of Baltimore.

Info Seeker
Posts: 2
Registered: ‎05-17-2017

Re: Is anyone taking care of a spouse?

Message 15 of 278 (1,166 Views)

I understand what you are going through.  Life can be cruel, not only for us, but for our spouse's and family members.  What we need to know is that life will get better at some point.  I send healing thoughts your way.

Info Seeker
Posts: 1
Registered: ‎12-07-2012

Re: Is anyone taking care of a spouse?

Message 16 of 278 (1,175 Views)

I am 54 years old and have been caretaking for my husband for the past three years.  He had a severe stroke and heart attack.  I was told by the social worker that I could apply for help through medicaid but they would come after my house for payment if he passed.  That's another story to tell at a later time.  At present, I shower him, dress him, take and record his blood pressure; prepare medications take him to all his doctor appointments, exercise him daily, change his bed daily, empty urine, clean constantly, wash constantly - the list goes on and on and I have no help.  What is really bothering me is why I can't get licensed as a caretaker by experience.  I don't mind paying for the license itself, but I don't need to take classes.  If anything, I should be teaching classes.  AM I the only one with this issue? 

Frequent Social Butterfly
Posts: 261
Registered: ‎05-04-2011

Re: Is anyone taking care of a spouse?

Message 17 of 278 (1,182 Views)

l536249b wrote:

Hi, my name is Linda and I have been a caregiver to my husband for the past 44 yrs, but a health caregiver for the past 3 yrs. My husband suffered a massive Aphasia left brain stroke in November 2014. Both of our lives changed forever that fateful day. My life has went from being independent, outgoing and pretty happy and healthy to what I consider Hell on Earth.  He has physical limitations due to Spinal Stenosis, but the main caregiving is a result of his stroke.  His personality has changed 180 degrees.  He is very angry and he ONLY takes his anger out on me. To everyone else he puts up a front as if he is the kindest person around.  I am his one and only caregiver and expected to do everything for him. With the exception of dressing and bathing him. He is depressed which would account for a small portion of his anger. For those who are unaware depression is anger turned inwards. I need help as I feel lost, hopeless, helpless and certainly unloved. Anyone else dealing with a spouse with the same or similar symptoms /conditions and how do you survive?  I have no one to confide in and absolutely no help from our 4 children . I would love to be able to speak with anyone, either man or woman dealing with caregiving. Thank you 


Hi Linda. "Hell" is most unpleasant, and has the additional quality of being 'forever', like a life sentence. Let me ask you a few questions.

 

What if you were the person with spinal stenosis and thus some functional limitations, which your husband of decades helped with. And then you have a stroke, and many more limitations come upon you, and you turn from a wife and helpmeet to an angry abusive woman. Do you think your husband would put up with you?

 

Just asking you to look at your situation from a gender role perspective. Do you feel as though this is your fate, to put up with his anger, and all the work you have to do for him and for you, because .... why?  In the fine print of the marriage contract it says "you will martyr yourself if the husband becomes gravely ill"? 

 

First place i would go would be to his doctor, with him, and simply say, 'since the stroke, he has become very angry and unhappy. What would you suggest, doc?'  There are medications for agitation, for depression, for confusion, any of which may be a result of the stroke. If the doc can't answer the question, then look for a geriatric psychiatrist. 

 

What about a behavioral approach? If he's angry, do you need to hop to it? Or can you say, I will do as you ask if you use a nicer tone of voice. Or, if he simply can't help it, hire someone to help: i bet his behavior improves once it's not his wife whom he's yelling at.

 

Have you considered taking him to one of your 4 children's homes? Park him on the porch and say, have fun, i'll be back in about 4 hours?

 

Living in hell is pretty awful. what are you willing to do to get out of hell?

 

Jane

Info Seeker
Posts: 2
Registered: ‎05-17-2017

Re: Is anyone taking care of a spouse?

Message 18 of 278 (1,191 Views)

Hi, my name is Linda and I have been a caregiver to my husband for the past 44 yrs, but a health caregiver for the past 3 yrs. My husband suffered a massive Aphasia left brain stroke in November 2014. Both of our lives changed forever that fateful day. My life has went from being independent, outgoing and pretty happy and healthy to what I consider Hell on Earth.  He has physical limitations due to Spinal Stenosis, but the main caregiving is a result of his stroke.  His personality has changed 180 degrees.  He is very angry and he ONLY takes his anger out on me. To everyone else he puts up a front as if he is the kindest person around.  I am his one and only caregiver and expected to do everything for him. With the exception of dressing and bathing him. He is depressed which would account for a small portion of his anger. For those who are unaware depression is anger turned inwards. I need help as I feel lost, hopeless, helpless and certainly unloved. Anyone else dealing with a spouse with the same or similar symptoms /conditions and how do you survive?  I have no one to confide in and absolutely no help from our 4 children . I would love to be able to speak with anyone, either man or woman dealing with caregiving. Thank you 

Silver Conversationalist
Posts: 36
Registered: ‎08-28-2016

Re: Is anyone taking care of a spouse?

Message 19 of 278 (1,374 Views)

 It a battle royal and it is exhausting, I did look for an Alanon group there is none in my town or neighbor hood, as for the conservatorship laws I think they are ridiculously I am not asking to lock him up and throw away the key I am asking to have control so I can start setting boundaries for his behavior and put him on allowance, he my not be a physical danger to him self or me blut he is an indirect physical dangerto himself he is committing suicide by alcohol and is becoming a financial danger to both of us,

GEH
Frequent Social Butterfly
Posts: 261
Registered: ‎05-04-2011

Re: Is anyone taking care of a spouse?

Message 20 of 278 (1,369 Views)

g477525h wrote:

Thank You, I am seriously and I mean seriously considering doing that next time he takes the van after drinking it is in both our names, hopefully the police will let him call me to come get the van.

It is our only transport and I need it for work. Here in Texas being his first offense that I know of he may get 6 months but that would be long enough for me to do what I need to to do.

It seems it may be the only way I have to get him in front of a judge then so be it, he goes down for dui then maybe that will make it easier for me to get coplete adult guardianship over him, maybe the judge might nake that part of his probation.

 


It sounds like a battle royale. And exhausting.

I'm not an attorney, but i'm pretty sure that you can't just get guardianship over a combative very sick person who's made bad choices, UNLESS two physicians say he's incompetent to make either health or financial decisions (two different determinations.)  I went through a training to investigate claims of 'harm to self and others' for the purpose of committing someone to mental health care, and the proof you have to come up with is pretty intense. People have the 'right' to make really dumb choices. The only time the state steps in is if he is a danger to himself or others and that is very strictly defined. Do you have an attorney? They are not cheap: perhaps your friendship network has a lawyer in it? If you have a faith community, maybe there's one there. You could ask about the process of guardianship. But i really think taking away his keys is the best thing, and then dealing with his Royal Orneriness becomes less of a threat. Death by car is not a good choice. As you know.

 

I'm serious about you finding an Alanon group. Everyone there has been through some version of this with an alcoholic. It's free (a dollar donation is suggested) and it's good stuff.

 

Keep talking. We're here.

 

Jane