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Topic A Hard Cold Dose of Reality Go to previous topic Go to next topic Go to higher level

By mytngenes On 2012.05.15 21:35
Friends, I am hurting....emotionally. This past weekend should have been a weekend of rejoicing the birth of our first grandchild (a boy), but instead I experienced a hard cold dose of reality as it relates to my hubby and his mental state. I should have been prepared for it. But this Southern Belle/Scarlett O'Hara did what she always has done, looked for the positives and decided I'd think about the negatives 'tomorrow'.

I was so hoping that my husband (aged 59/dx'd nearly 14 yrs ago) could join with me and our son and daughter-in-law in the joy of the moment, but I have to confess, it was a very trying weekend dealing with him I should have left him at home, rather than to take him with me 45 miles away to await the birth at the hospital. Thankfully my younger son was able to take off work early to make a 60 mile round-trip to get my hubby and take him home to son's apartment. I won't go into the details, but reality hit me like a bulldozer!

The reality is that I cannot make my husband "normal" and therefore I cannot insist that he join in activities away from his routine and from home because if I do, he is miserable and he makes everyone else miserable. The best way to describe his behavior over the weekend is that he was like a spoiled child, huffing and puffing whenever he did not get his way, constantly wanting to go and get something to eat, to leave the waiting area ("get a hotel room")etc.. One thing in his defense, he was doted on as a child, never told "no" about anything, as his mom and older sister tried to make up for the fact that his dad died when he was 2 yrs old. He always had anything he ever wanted, yet as an adult he realize their behavior and treatment of him was abnormal and kept his distance from them (we always lived hrs away from them, at his choosing). But when he had to retire due to the Parkinson's we moved back to his hometown so they could help me see after him. Now his mother is 90yrs old with Alzheimer's and his 75 yr old sister takes care of their mother.

This reality check has also made me realize that if I want to take part in the lives of my children/grandchildren, if I want to go out of town to visit my parents who live in an assisted-living facilty 3 hrs away, if I want to go to my family reunion in June, I must do the things alone, without my husband. This is the really hard and tragic reality. I can no longer take him with me to these places that involve travel and staying away from home. Yet, as I learned today, I can no longer leave him at home alone with others to come by to check on him.

I am confused about what to do, as he's no longer able to stay at home by himself-not so much due to the physical symptoms of Parkinson's, but due to the dementia and mental problems. As today, our preacher called me (I was out of town at our son's with the new baby) telling me my hubby had called a terminally ill man/dying of cancer 14 times today and walked 2 blocks in our neighborhood to visit the man. The man's family called our preacher to ask him to talk with my hubby about their need for privacy and no visitors. Also today, a good friend called me from Walmart saying my husband told him to drop him off there so he could wait for me to come by on my way home tonight (hubby knew I was not coming home and that his sister was coming by to take him to her house after taking their mom to a drs appt out of town). In talking with hubby, I soon discovered he had mixed his meds all up, taking today's dosages with parts of wonder he was confused and not thinking clearly.

Long story to say, I realize I can no longer leave him to go to work out of town, or visit our sons or my family-he now needs constant supervision, not from the physical symptoms of Parkinsons, but from the dementia and mental problems that come from the disease and/or unless I get someone to come in everyday or unless I move him to an assisted living type of place where he can have constant supervision, I can no longer do my every day activities (work) or enjoy my family (new grandson).....

A sad dose of reality, and I was not ready to face it...are there others of you who have had the same reality-check? I cannot stay home, I have to work (guilt here) and I want to be able to go and see my children and grandson who live an hr away (guilt here too) and I want to be able to go and visit my elderly parents who live 3 hrs away in an assisted living facilty (guilt here too). How can I live my life and do these things when he's now got to have constant supervision?

Tomorrow I must begin investigating places and people as life as we know it must now change for a hard cold dose of reality has sunk in. Thanks for letting me voice my fears and frustrations....

By phoenix On 2012.05.15 21:57
Wish I had answers - just writing to say I understand. I'm taking early retirement next month to stay home and look after my hubby. His mental state too is not great, so easily confused and I have no one else to stay with him so can't ever go out at night, no social life. My parents, both in their 80's and not well, live 6 hours away, and I haven't seen them in almost a year because it's impossible to take him anywhere. I know he can't help his behaviour, the drugs and/or P dementia have set in and make it difficult for him to understand anything out of the ordinary. But so hard. I can't imagine investigating places, but my thoughts are with you. You're not alone, if that helps.

By lurkingforacure On 2012.05.15 22:02
It is odd that you wrote this as I have been having the same cold water thrown in my face lately. I realize if you have PD you just cannot do things everyone else does. It is no one's fault. But at the same time, things have to get done.

I am very worried about my husband being able to attend an event coming up, it will be long, tiring, boring, and he will have to sit for a long period of time, which is very hard for him. I don't want to leave him out but I also don't want to stress him by having him go. It's a lose-lose situation and I don't know what to do.

It could be much worse, as you are dealing with. You have a lot on your plate and I hope that you are able to handle it all and still find a way to enjoy your new grandson, family, and work. Please keep us posted on how you manage.

By chroop67 On 2012.05.15 23:42
I think that he needs to be in care. We had to move mom into care 2 years ago. She is not always happy there but she is cared for very well. She too has dementia and we did everything to keep her in her home but the disease always wins and we all lose. It truly is a long goodbye and we have to accept that often our loved is already gone before they truly are.

By hatepd On 2012.05.16 00:30

By susger8 On 2012.05.16 07:21
This is a tough stage and it's very hard to decide what's best. I considered assisted living for my dad but on the advice of his social worker, decided to get a home health aide instead and let him stay in his own home. For him, it was a good decision since he is not at all sociable and probably would have just stayed in his own room and not participated. He gets one-to-one care from the health aide and I can still work. (I am the main breadwinner in my family and carry the health insurance, so it's not an option for me to stop working.)

I am a bit biased against assisted living, since most of them seem to ask the person to leave once they get to needing a significant amount of care, and then the only option is a nursing home.


By packerman On 2012.05.16 09:48
i am here if you need to talk.
you have my cell number.

By Jane On 2012.05.16 12:33
I can so relate. My problem is that my husband wants to join in all of my activities. The problem is that with his symptoms he becomes so needy that I can't enjoy the activity. I can't tell him not to join me because he has no other means of socialization other then with me. He resist all of my suggestions that he finds a support group for people with Parkinson's so that I am not his only support. As he has no family living close to us, I am his only support which adds to my stress load. For now I am working through feeling of my life being changed so much due to his illness and trying to make the best of it for me.

By moonswife On 2012.05.17 11:22
reading the responses of several wives has shown me you, and I, apparently are certainly not alone. I identify with both the people that limit activities because of the fatigue factor, and the person who deals with a husband that yearns to participate. I am resisting retiring so far but have a new challenge, JURY DUTY. I appealed the court I was assigned to so I could be closer to home if called in an emergency (I work 3 minutes from home). I was moved to the courthouse 3 minutes from home, only to find out yesterday it is closing due to budget cuts. Yikes. We are all balancing so many balls I think we need to have more arms.

By parkinit On 2012.05.17 11:52
mytngenes -

Yes, more and more I leave my spouse at home. He is happier there and because of this, I don't feel guilty. If I plan on taking him out, there is a 50/50 chance we will end up not going or have to leave early and I'm on pins and needles worrying about him, if we will have to make a quick exit, etc.

One thing to provide assistance - since you mentioned you have to work - is to ensure he has disability payments. Have you claimed disability for him? If not, you should, so this may alleviate some of the financial burdens to you. Anyone who has Parkinson's Disease should be able to get disability. We had to contest it when turned down the first time but it finally went through.

Many of us are in the same boat. We are here to sympathize and provide support and hopefully, even maybe help a bit. :)


By seawench On 2012.05.17 19:19
I have had to learn to be flexible, have contingency plans and sometimes to just let go. My hubby has PD Plus and so we know that our time is short, We try to take advantage of every opportunity we can. That being said we are also choosey with our resources.

Case in point we thot we would go out of state to spend Thanksgiving with his family- but we got such static about it we are re thinking. It takes a lot of time money and physical reserves for a trip like that, and if we are left to feel like we are imposing than what is the point? They are all fairly healthy, travel a lot and have financial resources we do not. If they want to see him while they still can then let them come to him where he has all the things he needs for his day to day routine and care. We will chose to make the sacrafices that travel demands to do and see things he wants to before he can't.

For many years he was incapacitated by many of his symptoms but in the last year we have been able to find workarounds. He had a hemorroihd surgery, got a scooter, got an amazing device called a URO Dry for peeing (AMAZING DEVICE - did I say that?) that makes being away from home possible for extended time. It also makes the 6 hour car trip to my folks do able. And a portable Bidet that makes pooing do able and we take it with us. Packing everything but the kitchen sink takes on new meaning with that one :)

I only have 14 days a yr of time off and I work 6 days a week. Fortunately I work as a resident manager so I get to be with him and still work. So those PTO days are precious and we are trying to spend them wisely. We do try to build rest days into our travel and sometimes things just aren't going well for him. We were at my mom's for her birthday and spent most of the party in the bathroom. *sigh* I was just grateful that over the space of the weekend I did get a chance to spend time with precious people - even if it was in little bits.

We applied for disability last May and it took less than 3 months to get approved. The following month PD was put on the Soc Sec's fast track list, so it should be a much smoother process for those with PD these days. Just remember when filling out forms to be specific about how this disease prevents them from working. I wrote that he could no longer help me in the office because he could not be understood on the phone and that his cognitive abilites would desert him when faced with an uspet customer. and so on. It took almost a week to fill it out becase I had to keep putting it down and crying - I miss the man he was and I greive the losses the man he is has had to suffer.

As we have all posted here - We as caregivers have to make a lot of sacrafices, We no longer have a "Normal" life, we have constraints and unknowns, working within these parameters can be like walking on a tightrope and we never know how it's going to turn out from moment to moment. I work to surround myself with those who understand this and allow me a free pass to come late. leave early or decline at the last minute. His life and his needs are number one and my needs are facilitated by learning to roll and finding pockets of special times and special friends who know how to be the friends I need.
Thanks to this forum we know we are not alone and we can learn from those who have been there and shore up those who are struggling. Thanks for your encouragements and wisdoms and hugs to you all

By phoenix On 2012.05.17 23:21
Seawench - I looked on the URO dry website. There are several products. Which one is the amazing device?

By karolinakitty On 2012.05.18 09:27
sent you a private message.....

By seawench On 2012.05.18 10:38
Alpha Dry - condom reservior from Uro Dry

They also have a larger reservior that I am looking at for when he will need it at night.

I call it amazing because of the difference it has made in our lives and the freedom this has blessed us with.


By karolinakitty On 2012.05.19 15:46
Seawench...I found a product just like that from of all places a pilots accessories company and ours work great too....they have an adaptor that comes with them for women as well

I agree about surrounding yourself with people that understand....losing friends and family is a typical side effect with PD. Most of us have learned that and finging the right friends who can understand a last minute bump are the greatest....we have been fortunate to find a whole new group who totally get it....those we find that don't...their loss in my book....
keep on keeping on!!!!!!

By cmonge On 2012.05.21 07:04
I completely understand how you feel. My husband wants to go everywhere with me and gets hurt when I don't want him to go. I make excuses for him to stay home. But sometimes I just can't enjoy myself with him there. It becomes all about his needs or he gets tired and wants to leave. It's so frustrating. You have to do what is best for you and will give your husband the care he needs. I understand, I have to work too. You have to take care of yourself and your sanity.

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